When we love and allow ourselves to be loved, we begin more and more to inhabit the kingdom of the eternal.  Fear changes into courage, emptiness becomes plentitude, and distance becomes intimacy.

– John O’Donahue

What sort of miracle brings two souls together?

I met Andrea in May of 1981, hoping to temporarily sublet her room in Manhattan while I would be seeking my fortune as an actor. Right away we recognized our shared passion for theater, and that we both had parents who squelched our soul’s desire to live as artists. I believe that our attraction to one another was ancient and soulfully inspired, and that well before we knew it, our two souls knew that we were destined for love. Clearly our deep understanding and shared passions launched us on a broader, richer, lifetime journey of deeper and deeper caring, until finally, thirty-six years later, following a long life together, Andrea would die from pancreatic cancer.

What happens when we dare to care deeply while in the sacred presence of suffering? After Andrea’s death, I became engulfed by darkness and claustrophobic emotional pain, similar to that experienced by Rainer Maria Rilke in this poem, It’s Possible.

It’s possible I am pushing through solid rock
in flint-like layers as the ore lies alone.
I am such a long way in, I can see no way through and no space.
Everything is close to my face and everything close to my face is stone.
I don’t have much knowledge yet in grief
so this massive darkness makes me small.

Then, the poet cries out, perhaps to a stranger or lover, or to a friend or physician, or maybe to a higher power:

You. Be the master. Make yourself fierce. Break in!
Then your great transforming will happen to me, and my great grief cry will happen to you.

Perhaps we all long for a soul friendship with our doctor or therapist, our friend or lover; where both the sufferer and the one trying to help become equals, daring to stay awake in the face of deep suffering. Theirs is a sacred exchange allowing for profound, mutual transformation. Deep caring, in the spirit of John O’Donohue’s notion of Anam Cara or soul friendship opens the door for “helpers” to not only become transformed by the pain of the sufferer, but also healed alongside them.

Buddhist teacher Joan Halifax might help to clarify some of the complexities of soul caring. In her article, Standing at the Edge: Finding Freedom Where Fear and Courage Meet, Halifax paints a vivid picture of the edges she encounters on her walks from her small cabin in the mountains of New Mexico more than 12,000 feet above sea level, where, she writes, “courage meets fear and freedom meets suffering.”

I have come to see that mental states are sometimes friendly and at times hazardous terrains, and like natural environments, they are embedded in the greater system of our character. I believe it is important to study our inner ecology so that we can recognize when we are on the edge, in danger of slipping … Edges are places where … fear meets courage and suffering meets freedom. Where solid ground ends in a cliff face. Where we can gain a view that takes in so much of our world. And where we need to maintain great awareness, lest we trip and fall … How can we stand on the threshold between suffering and freedom and remain informed by both worlds?

How then do we hold onto the larger landscape Halifax describes? Can we safely, and responsibly approach the cliff face with our clients, patients, and loved ones? Can we let ourselves resonate enough with their suffering so that our encounter with them shakes us up while also enriching our lives?

Let’s return to Andrea who believed with nearly every fiber in her body that she’d be an outlier. Pancreatic cancer would not kill her – at least not for a very long time. I wanted to believe that too. Most of the time I did.

Ten months after her initial diagnosis, she’s rushed to Baystate for emergency surgery. Her pancreatic tumor is invading her stomach cavity blocking food from entering her small intestine. All food she had swallowed with great difficulty over the past several weeks had, unbeknownst to us, been backing up in her stomach cavity, except for what she managed to regurgitate. What remains now in her stomach is decayed food that has rotted and hardened like a rock in her belly.

I’m sitting by her side as attending docs and nurses make their daily rounds. Every few hours the G-J tube gets clogged. (It’s function is to bypass her stomach and carry liquid nutrition directly into her small intestine.) I’ve been trained by the nurses to flush the tube when it gets clogged, in an effort to prevent the liquid from calcifying. When it hardens, we attempt to de-clog the tube, often pouring Coca Cola into the tube to break-up the clog. When that doesn’t work, she goes back into surgery to replace the old tube with a new one. Andrea is looking worse every day. The nurses and nutritionists, on doctors orders, keep attempting and failing to get enough nutrition into her increasingly frail and pain-wracked body. Her attending doctors keep on examining, and chatting, and moving on to the next room.

Andrea is still unwavering in her determination. Her goal is to return to Dana Farber, begin a new chemo regimen, shrink the tumor away from her stomach, and start eating real food again. I, on the other hand am drawing my own conclusions. I strongly suspect that she is dying.

Consider this short poem by Rumi, which may bring us closer to the dilemma I faced as Andrea’s health rapidly declined.

You’ve given me your terrible Double Eye
that sees all things as empty and as You.
You scathe all flesh to bone, flame bone to light.
How could I survive such horror and splendor?

Why is Rumi’s Double Eye so terrible? Because as it encounters fear, helplessness, loneliness, pain, it also sees wondrous transformation, light, trust, renewal, love, possibility, freedom.

Can we ever survive such horror and splendor?

Back at Baystate, I am relieved to see one of Andrea’s particularly smart, empathic nurses working the evening shift, so I follow her out of the room.

We’re a few feet down the hall now. I’m taking a deep breath.

What follows is what I call our conspiracy of honesty:

“I have to ask you this. In your opinion, is Andrea dying? Because I need to know.”

Looking at me for a second, then averting her eyes, “Yes,” she replies. “ I believe she is dying.”

My head is spinning now. I’m leaning up against the wall trying to steady myself. I wonder if I am going to faint? Then I think, what if I hadn’t asked her? How long would this charade have gone on?

Then I speak. “I think I need to contact our family and friends and tell them that we don’t have a lot of time left. Am I right?”

“ Yes. That is a good idea,” she whispers.

Poet Mark Nepo writes:

To journey without being changed
is to be a nomad.
To change without journeying is to be a chameleon.
To journey and to be transformed
by the journey is to be a pilgrim.

Nepo further reflects:

The value of this insight is not to use it to judge or berate ourselves (or others), but to help one another see that integrity is an unending process of letting our inner experience and our outer experience complete each other, in spite of our very human lapses. Mysteriously, as elusive as it is, this moment – where the eye is what it sees, where the heart is what it feels – this moment shows us that what is real is sacred.

A week or so later Andrea is discharged from Baystate, loaded up on pain meds, and hooked up to her feeding tube. We’re driving with our kids and enough cans of nutritional supplements for a day trip to her oncologist at Dana Farber.

This is how I remember our meeting with Andrea’s doctor at Dana Farber:

Andrea: I want to survive this thing. Am I strong enough to resume chemo yet?

The good doctor: (speaking calmly, looking at Andrea with kindness) No, you’re not strong enough for chemo yet, Andrea.

Andrea: What would it take?

The good doctor: I know it’s been very hard for you to get adequate nutrition through your feeding tube, but that’s the only way for you to build up the strength you’d need to endure more chemo.

Andrea: Is there a possibility that I can get my body strong enough?

The good doctor: It’s possible. But the way things are looking it isn’t
likely, Andrea. It’s not impossible though. I see it as a long shot.

Andrea: If I were to become strong enough to start chemo, what could it do for me? What could I reasonably hope for?

The good doctor: I don’t know for certain. I would hope that chemotherapy would give you more time and extend your quality of life. That is if you can tolerate it. We would have to wait and find out.

Andrea: That’s what I want. More time.

The good doctor: I want that for you too.

Andrea: So what do we do now?

The good doctor: Here’s what I think. You’re medically eligible for hospice, and as you know, hospice provides comprehensive patient and family support and expert pain management. And your goal, even on hospice, can still be to get stronger, and eventually get discharged, get back home and start outpatient chemotherapy. I’ll follow your care wherever you choose to be treated for as long as you want me to. And if you don’t achieve our wish to regain your strength, you’ll already be with providers who know and love you and your family. I believe in hope, Andrea. It’s a long shot, but I think it is reasonable to hope for more. What are your thoughts about all of this? What are your questions? (She simply looks at each of us now, and waits.)

Yes …… what is real is sacred …

A few days later:

I call Maria Rivera, director at Hospice of the Fisher Home, a hospice house near our home, where Andrea and I once worked. We both felt it was the best place for her to receive care. I tell Maria that Andrea is ready for hospice, but only on the condition. Maria and the hospice team would have to respect both our hope for an eventual discharge and our belief that an eventual discharge is possible, despite the odds.

Rob: I know it’s unlikely, Maria. I guess I’m of two minds ( I start to cry). I know there’s a chance for her to survive, but I also know she won’t. It’s impossible. There’s no chance. She’s dying. But at the same time, there is a possibility she’ll start chemo and get a new lease on life.
Am I crazy? Do you understand what I’m trying to say to you, Maria?

Maria: I do, Rob. I’ll believe along with you, with my heart and soul, that it’s possible. I also know how hard it is to be of two minds, Rob.

I didn’t realize at the time, but later I understood that Maria was also saying how hard it will be for her to be of two minds while caring for Andrea. You see, I had handed her the terrible Double Eye that sees all things.

Three weeks later, Andrea is extremely malnourished, heavily sedated, her body not absorbing nutrition.

Maria asks me to join her on a bench overlooking the gardens out back. She’s telling me that Dr. Rosen, the hospice medical director, has spoken with Andrea’s doctor at Dana Farber. Then Maria stops. She can’t seem to speak. Tears are welling up in her eyes. Now she’s weeping. She tries again to speak, but she’s overwhelmed. We’re holding each another now and crying and shaking together for what seems like a very long time. She tries speaking again, but still can’t get any words out. Then bursts of incomplete sentences, through sniffs and deep breaths:

Dr. Rosen … phone call… dying … Dying, Rob. She is dying soon. Both doctors agree. She’s dying soon.

I often wonder how open-hearted, broken-hearted, caring people, like Maria or Andrea’s good doctor at Dana Farber, dare to be real, and to journey with patients who are living, in the words of writer Francis Weller, on the wild edge of sorrow.

I believe that a good doctor or a loving partner, a soul friend, will be honest and listen and sometimes offer hope, and, if the time comes, help their beloved face what is unthinkable.

I believe that good nurses; kind, brave friends; good therapists; are pilgrims who sit beside us on that edge, or on a bench overlooking a beautiful hillside in bloom, and dare to experience their own “great transforming,” their own deeply-felt woundedness. And they are changed by this. And, perhaps slowly, miraculously, they witness an alchemical miracle – bare bones are stripped of all flesh and transformed into golden light.

9:00 pm in the evening, my kids and I tell Andrea that her doctor at Dana Farber believes she is rapidly dying. The feeding tube, which was only causing her pain, needs to be discontinued. She is being advised to let her body die as peacefully as possible.

Tough as nails, Andrea insists that we call her doctor at Dana Farber immediately, so she can hear this directly from her. And miraculously, at 9:30 pm, our son Zack reaches the doctor at her home. The conversation between Andrea and her doctor was private and sacred – certainly one more holy moment on both their journeys.

A year and a half later:

I meet Teresa at a new year’s day open house hosted by mutual friends. Two and a half years earlier, on a beautiful June morning, Teresa’s partner, Rick, died with no forewarning while she slept peacefully beside him, her loving arms wrapped around his naked body.

Neither Teresa nor I ever believed that our first encounter was an accident. The morning before the party, she was hiking in Connecticut with friends. Afterwards, she felt peaceful, maybe a little tired, so she thought she’d skip the party, go back home, take off her bra, get out her watercolors and her journal, and stay warm – by herself. After all, a crowded roomful of celebratory couples was certainly unappealing to her as it was for me. But we both, separately decided to go. After all, we could always slip quietly out the door if it became unbearable. And so we met.

Writer Boris Pasternak wrote:
When a great moment knocks on the door of your life, it is often no louder than the beating of your heart, and it is very easy to miss it.”

We didn’t quite know why we felt so compelled to talk to one another, but we certainly skipped the small talk and started sharing our most intimate experiences of loss for hours, right beside the hummus and chips. We believe now that our souls knew right away that we were falling in love. There is, after all, something soulful and sacred when two people stumble upon love. And there really is no such thing as an accident.

One evening, not long after we met, we crawled into bed naked and I read th memoir I’d begun to write. It felt right for us to be naked, raw, inviting our hearts to be broken-open again while, hopefully, staying firmly grounded on the precipice.

It’s just over a year now since we’ve been together on what has become our pilgrimage of mutual transformation, our sacred exchange. Yes, Teresa and I still cry together, a lot, I suppose, and we laugh a lot too, and love very hard. In the words of Kermit The Frog, “It’s not easy being green.” But maybe that’s the best prescription I can come up with for self-care.

I’ll close with these words from Francis Weller’s book, The Wild Edge of Sorrow.

Consider the possibility of imagining this time as a holy hour, a threshold moment revealing … what is most vulnerable in our world, what is most in need of our kindness and compassion. … If we can move one step deeper into our silence and solitude, we might be able to make the moment holy and redemptive, calling the outcast parts of us home and calling the anxious edge of avoidance to slowly diminish.

Then, perhaps, an ancient belonging awakens and discovers itself.

Somehow we survive.
And slowly we heal.

May it be so.

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Blog post about soulful caring by Rob Zucker

On Soulful Caring

When we love and allow ourselves to be loved, we begin more and more to inhabit the kingdom of the eternal.  Fear changes into courage,

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